Facing Scoliosis Suspicions With Facts and Not Fear

Columnist Sabrina Johnson tackles the potential diagnosis head-on

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by Sabrina L. Johnson |

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My daughter Juliana has been wiggling. Upon first glance, the wiggling is really cute. It’s something between a dance and a silly walk where she arches her back. When Juliana does her silly wiggle dance, we laugh, and she does it more to capture our attention.

I hope it’s merely a silly wiggle phase, because one day, I remembered a conversation I had with another Angel mom about scoliosis. There’s nothing silly about scoliosis. It’s a diagnosis I don’t want to think about, but I must.

Scoliosis is an abnormal sideways curving of the spine. If left unchecked, it can be painful and very debilitating. About 20% of children and 50% of adults with Angelman syndrome (AS) have scoliosis.

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I know a few special-needs kiddos who have been diagnosed with scoliosis. Recalling my conversation with the Angel’s mom and thinking about signs I’ve been warned about made me think twice about Juliana’s wiggling. Replaying the conversations in my head prompted me to action.

Being the early bird

Early intervention is never a bad idea when living with Angelman syndrome. We received an early diagnosis, and I believe that helped us prepare for what was coming. As an infant, Juliana participated in our state’s early intervention program. We received invaluable speech and physiotherapy services during our three years in the program.

I will forever be indebted to those first therapists who helped me navigate all the uncertainties that come with an early Angelman syndrome diagnosis. As scary as it’s been to think about scoliosis, facing it head-on is the best choice. When I think of the benefits we’ve had from starting therapy early, the same advantages apply to a scoliosis diagnosis.

The wiggling isn’t happening all the time, and Juliana doesn’t seem to be in pain. But anyone who knows an Angel understands that their pain and discomfort can be masked by their smiles and happy demeanor. Right now, I could be a mom fretting and doing a lot of Googling. But, in full disclosure, I’m not.

Waiting for the worm

I’ve done what I feel is the most crucial first step: getting a referral so that a specialist can perform diagnostic testing. It’s taken a lot of restraint not to Google the word “scoliosis.” Instead, I simply researched the topic on the Angelman Syndrome News website. I trust our competent professionals who stay abreast of trends in AS and provide trusted facts about the disorder. The facts I found on this website are all I need for now.

Although Juliana’s orthopedic appointment is this week, I’m not fearful. You face a lot of uncertainties with AS. With that, I’ve learned that facts and plans make handling various circumstances easier. If we have to face scoliosis, I feel confident that we’re catching it early. And if it’s not scoliosis, I’ll surely count my blessings and keep the laughter coming during Juliana’s wiggle dance.

Note: Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angelman Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Angelman syndrome.


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